Inside Health

Dispute Highlights Risks In Use of Genetic Material

By AMY HARMON

Published: April 22, 2010

A settlement between 41 members of the Havasupai Indian tribe and Arizona State University highlights the risk researchers take when they fail to secure what is known as ''informed consent,'' fully informing research participants how their DNA may be used, legal experts and civil rights advocates said.

''It sows distrust,'' said Hank Greely, a law professor and director of the Center for Law and the Biosciences at Stanford University. ''And researchers cannot do their research unless people are willing to trust them.''

Citing the Havasupai dispute in recent years, other Indian tribes have refused to participate in genetic research. (Under the settlement, the Havasupai agreed to ask other Arizona tribes to repeal resolutions saying they would not cooperate with researchers at Arizona State University.)

Other cases have shown that people involved in medical trials and research want to be asked before their donated DNA is used for different purposes.

Parents in Texas sued the state health agency when they discovered that blood taken from their newborns, to be screened for genetic disorders, had been made available to scientists without the families' authorization. Some samples, they later learned, had also been provided to federal law enforcement officials for research aimed at improving the interpretation of forensicDNA evidence.

''The nurses asked me if they could give my son a pacifier. They asked me if they could give him formula,'' said Andrea Beleno, 34, of Austin, Tex. ''No one asked me if his DNA could be stored in a state database.''

In the Texas case, and a similar one filed by parents in Minnesota, the states agreed to destroy the samples.

''It is a gesture of respect to say, 'We told you we wanted to do one thing, and we'd really like to do something else,' '' said S. Malia Fullerton, assistant professor of bioethics at the University of Washington in Seattle. AMY HARMON